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WHERE IS THE MOVEMENT?

In a few weeks it will be my official 3rd anniversary with a diagnosis of idiopathic Parkinson’s disease. It wasn’t a surprise to me and as with most of us I initially felt more relief than anything as I had been told I had Parkinsonism symptoms three years prior to my official diagnosis.

What has transpired in the three years? Well being in the healthcare profession, a physiotherapist for 29 years I researched PD and think I am very close to getting my PHD!

I am stuck at present. I am an advocate for my local PD family but I have not gone any further. I have attended workshops with the MDS on the latest outcome measures in the treatment of PD. I am a PWR! /Exercise 4Brain Change clinician and have started an exercise class for my local PD family. I have networked and met many PWP. We are all dealing with a progressive neurodegenerative chronic disease which has no cure. Sure there is a lot of research in the pipeline around the world however do PWP have a better quality of life than they did 10 years ago? 20 years ago? I am not convinced. I see and listen to PWP in my local community and learn about individuals diagnosed with PD through social media. There is a lot of suffering going on in the PD community, a lot of broken relationships, and a lot of fear. The most daunting observation for me is the fact that there are so many PWP falling through the cracks in our own communities, suffering from isolation, loneliness, poverty and neglect.They are not living a very good quality of life and are unable to access services. Healthcare is in crisis mode not preventive. Not only is this happening. More and more people are being diagnosed at a younger and younger age. The implications for a decent quality of life are in my opinion, much less the younger you are diagnosed. We can become burdens to our families and to the state at a very young age. We are unable to hold down our jobs. The pharmaceuticals which are prescribed to YOPD are more often than not full of hazardous side affects which ruin relationships, create financial barriers and ultimately decrease quality of life. It is now 2013. Where are we going? I perceive there is little hope of a cure for us in the next 10 years unless we as PWP move on to being activists and create a movement for change. This has to be a global commitment and it has to be powerful. It is time for influence, change and possible cure. We must influence our medical professionals, the scientists, our governments, our agencies and the policy makers. The ‘we’ is US the people living with Parkinson’s disease. Activists seek goals in civil and political spheres. In this case the activists must be PWP.

In my mind there are strategies out there to bring the much needed change for PLWPD. If we all can look back in history and remember how people living with HIV/AIDS showed us that even under the most difficult circumstances it IS possible to achieve change. We need to go BACK to the BASICS. (http://www.hcmstrategists.com/content/Back2Basics_HIV_AIDSAdvocacy.pdf) Activists can become social movements if we work together. We need to honour the contributions of our gifted activists who have been working tirelessly over the years. We in the PD community can learn from others impacted by chronic and debilitating diseases. We need to bring our fellow advocates together to catalyze change. Our voices need to be heard and we must question the status quo. We need a model to follow.

We absolutely need a change in medical research (the MOVEMENT). We want a cure ultimately and/or to at least to stop the progression of the disease. With this we need a change how research is conducted, how drugs are approved, and how patients engage with federal governments and the private sector. From my research in how the HIV/AIDS movement made the difference in their treatment options now We PWP NEED:

Resources for research in a timely matter

Treatments options for everyone……. not just those in advanced stage of disease which incidentally this week, the Canadian Parkinson’s Society announced the Ontario government is only funding those in late stages of PD to access duodopa gel which is in the last stage of trials in the USA. DUODOPA is a combination of levodopa and carbidopa in the form of a gel that is administered directly into the small intestine through a surgically placed tube. This treatment is for use in patients with Advanced Parkinson’s disease who do not have satisfactory control of severe, disabling motor symptoms when using available combinations of other medications for Parkinson’s disease. Duodopa has received a Notice of Compliance with Conditions that it is only used for Advanced Parkinson’s disease. (ref, Canadian PD Society) This is so WRONG! In my opinion. Governments have seem to not get fiscal responsibility. A YOPD who is overmedicated and suffering from many off and on periods is going to cost governments much more than PWP in the late stages of disease. They quickly become a social liability. Where is the PREVENTION?

Prevention Efforts

Federal Care Programs

International efforts to ensure prevention and care are Global Priorities

Change is possible but how do we create change? The voices of advocates must be heard and we must question the status quo. Alternatives must be presented that are possible. We need strong leaders to work with governments and federal agencies who produce policies and strategies with clear goals which will hold them accountable. The movement as a whole has to have POWER. The Occupy Movement never ended up as a movement as there was no change. There was awareness but no change. People Living with Parkinson’s disease around the world need a movement similar to the HIV/Aids Movement , We needed it yesterday. WHO WANTS TO JOIN THIS MOVEMENT? Send me your thoughts.

Here are Mine

1. We need more effective medical research that is meeting PWP needs.We need to transform medical research into patient driven clinical trial designs, accelerated approval and removal of restrictions on study entry criteria and inclusion of all PWP in clinical trials

2. Accelerated Drug Approval- Why not make new drugs widely available to patients in need as quickly as possible?

3. Parallel Track Activists must collaborate to create a system of their own. There must be special programs to distribute drugs currently in clinical trial pipelines but not yet through the trials. We need to get them available to patients who are suffering. The FDA must provide accelerated approval procedures to enable pharmaceutical companies to be able to market new drugs and approve drugs way ahead of schedule as long as the companies agree to complete certain clinical trials. PWP need access to drug sources.

4. We must encourage and create a general political will to support federal investment in research for a cure. We must have increased funding ( a cure is cheaper than the treatment ) Reference this to the Ryan White Care Act. Initially 200 million was set aside for services to people with HIV. By 2011 the total funded federal spending in the USA on HIV/AIDS is 27 billion. The money is spent on research, care and assistance, and international program carried out by drug agencies. Research Activists led the efforts, policy makers implemented the changes. We need an advocacy model to get a MOVEMENT for Parkinson’s disease. This model for AIDS was the most successful public policy change model ever seen in history. WHY HAVE THE PARKINSON’S COMMUNITY NOT LEARNED FROM EXAMPLE?

WE MUST inspire people to a level of civil disobedience, PWP must get attention. WE ARE FIGHTING FOR OUR QUALITY OF LIFE AND OUR FRIENDS WHO HAVE PD ..I think we are motivated enough to get attention. GETTING ATTENTION REQUIRES PEOPLE TO FEEL UNCOMFORTABLE, WE AS PLWP ARE UNCOMFORTABLE EVERY DAY! WE MUST MAKE THE DECISION MAKERS UNCOMFORTABLE, THEY DON’T NEED TO FEEL SAFE, WE MUST CHALLENGE THE STATUS QUO WITH NO COMPLACENCY

This will be challenging as it is harder to be heard today. We must analyze communities and their strategies for dealing with PWP. We must understand the consequences of inaction. Please Read Back to the Basics. http://www.hcmstrategists.com/content/Back2Basics_HIV_AIDSAdvocacy.pdf

World Parkinson’s Congress 2013 is in Montreal October 1-4th. PWP can deliver the message if we are informed. We have an opportunity to sit at table with all stakeholders. We do not need a demonstration in New York City , We have Social Media now. PWP are connected all over the world now! We can achieve a movement in 2013. TOGETHER WE WILL WIN!

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I am physiotherapist diagnosed at age 47 with Parkinson's disease. Volunteer in my local community with parkinson specific exercises for PWP. Founder of ParkinGo Wellness Society, www.parkingo.org .Tireless advocate for better quality of lives for people living with PD across the global community.Ambassador for www.parkinsonsmovement.com and a Global Ambassador for WPC2016 Portland Oregon Sept 20-23

28 comments on “WHERE IS THE MOVEMENT?”

i embrace your enthusiasm and spirit. I appreciate your intelligence and the scholarly tone of your piece.
In late 60s i pretty much turned away from politics. Through the enuseing years I have not regrettedmy decision.
My energies are elsewhere. An old saying comes to mind. Reformers are wanted not of others but of thermselves.I hope you are able to muster all the grace and suppiot necessary to accomplish yourf goals.

apathy jill is a big problem , me and sue have been trying months for pwp to get involved with our own awareness push , in a few days time we have a meeting with one of our mps over here to let them know how this really is the forgotten disease , we have been asking for help from many sites for letters and info to take with us to this meeting we got responses from some people but not as many as we wanted , we will still go and have our say , but i do hope one day all groups can come together and we could become a massive voice in the pd world action is needed not just hopes that one day some one will change things, all together we can change the way pd is looked at and that day should be now because your right if left like it is now we will still be in the same boat in 10 or 15 years time

HI JILL
as you probable know i among others have been calling for all groups worldwide to coerce to this effect we need one very loud voice not many weak ones that get lost in the sands of time.shouting out on a global scale as one united group would be so strong that even our most stubborn opponents would have to sit up and listen. before we can do this we have a tough in house enemy to eradicate and that is the evil demon known as APATHY he lives in all branches of society and is mankinds biggest foe,
in the past i have been treasurer for a local schools PTA it was killed by APATHY the parents were only interested when something was on offer for them.Up to a couple of months ago i was treasurer for a community group,stepped down because of pd and several other problems with health but still on the commitee. oh yes people loved the help and changes we were making but when asked to contribute that was a dead end apathy once more.
just recently i tried to start a campaign to find out why research on the rogue intestinal protein was stopped or at the most slow. i asked for peoples stories on this subject so that i could confront the powers that be with reasons why research into this was vital,i expected many replies but got less than twenty some of which the senders did not want to be named.Also two days into the campaign i had a 30 day ban from friend requests and messaging thrown at me by face book,coincidence? or did i tread on someones toes.
i realise thisd post sounds negative and goes against every thing i stand by,but it is what i have found in most things i have tried to do,it makes me so angry that just a few people i have worked with have had the pure guts to try and change things.
there are many ofv us on the groups on face book who are working for recognition and more help but i bet for every one of us there are a couple of hundred that meekly accept their lot.i feel we need to lessen this amount of i.m happy as it is attitude as if any public testing on opinion of our plight is held these people could scupper or at least hold back any advances we may have made .
i am sorry Jill but at the moment we too many chiefs and very few indians to back us up,i can assure you i will be fighting this issue until it is only a small percentage of the whole or until my time is up.

You have a brilliant mind, Jill. You’ve got me thinking. I’ m going to share this at our next Board meeting for WTPS. Thank you for sharing your ideas and enthusiasm! I’ m going to try to be more of an activist.

Necessity is the mother of all invention. Here in the UK there is no message of urgent necessity to find a cure for PD, like there was for HIV/AIDS. Too often the awareness messages are ‘a cure is almost there’ or ‘I have PD but PD does not have me’ or ‘PD is an illness you live with not die from’. All three statements do our hopes for any sort of cure no good at all. The grim reality and facts of PD are not used here as marketing tools to try to generate a sense of ‘necessity’ that may lead to the massive funding that is needed to achieve what is suggested in your blog. HIV, AIDS, cancer all pedal the full horrors of the illnesses in pursuit of maximising funding and research. In fact the opposite is all to often the case in the UK with well intentioned PWP doing daring deeds, parading what the very few with PD can do. A cure isn’t almost there, PD does shorten our life expectancy and PD does have us all.

Yes there seems to be no urgency anywhere in the world however I am saying people who are living with Parkinson’s must gather together for a stronger voice and define the urgency to the powers of be. It is up to us to do this or it will never happen. We have PD , we get it so we must do more for ourselves by insisting it be a priority.

Just wanted to say that a huge amount has already been done by PD activists, who have worked tirelessly over the last decade and more, however the task is an immense one and as with all health conditions that have waited for years for treatments to actually get to patients, it is going to take a new generation of activists to take up the challenge and move things on. The seeds of this are already there, and I would say there is apathy (or at least no real incentive to move things along)in sciance and medicine, because people who do not have PD do not realise the impact on our lives, or our sense of urgency. I liken this to patients being under the table, eavesdropping on the decision makers – what we really want is a place at the table where we can speak from a position understanding our condition and being essential to the goal of finding a cure and getting it to the people who need it. This means more than fundraising, it needs real engagement with the process.

What a great piece. Please visit my platform that I am developing. Let me know what you think. I am a friend of Sara Riggare, I have been treated for Colon Cancer. I would like to help your case. I look for to hearing from you.

Go Jill! I am gratefull as a young medical doctor with a specific interest in Parkinson’s Disease to have you on my team for my annual Parkinson’s Summer School (www.parkinsonsummerschool.com). Your ideas resonate and I like to expose my colleagues of all health professionals to your pro-active and constructive ideas.

You may like or dislike these ideas from a professional perspective, but having a dialogue on it to move forward towards better care is the LEAST we can do! (the MOST we can do: see you in Montreal at my summer school and at the World Parkinson’s Congress to get things going).

I, too am grateful for this, Jill. I am struggling not so much with the disease as I am with what do I do to help? I live in a very small town and I educate my overworked and well-meaning GP . Thank goodness he is not defensive. I have no access to a PD targeted exercise program or support group. This is not a snivel, but a fact, and with the help of Becky Farley’s research and the UBC team I have a pretty good workout going on my own. The PDLINK program, through Parkinson’s BC has found me an excellent mentor in another community. Again, I am grateful! I have been searching the literature, with little success, for information about PWP ‘s who are also heavily involved with caring for loved one’s who are ill. There is a ton of stuff written about supporting those who are caretakers of PWP’s but many of us are the caretakers in our families, (my husband has Alzheimer’s) or live on our own, and have no family support. I know I am not alone. Right now we are coping well and I am doing my damndest to make sure that continues for as long as possible and, believe me, I would so much rather be reading Jane Austen than brain research! Right now that is my number one hot button issue; we are not all supported by loving, capable spouses or partners. Our lives go one with all the bumps and hurdles and responsibilities that existed before PD and accumulate with aging. Number two is the notion that those whose disease is complicated by depression could somehow set things to right by a shift in attitude. I do not suffer from depression, never have, but perhaps will, as the dopamine dance gets wonkier. I am grateful for my own emotional resilience but do not consider it a virtue. And I want to shake silly the writers who smugly detail their “sunnyside up” approaches as something achievable by each of us with PD, if only one tried hard enough.

Wow! I just wanted to say “well-said, Jill” and ended up posting a novel. I will be thinking about how to support you…us all.

I totally agree with you! Alone we are nothing but being linked all together could help us to be heard! Everybody knows about the name of our disease but do they really the consequences in our daily life? It’s even more true for the young ones. That’s why I created my blog (sorry in French … but work in progress for translating every post!) : http://filsdep.blogspot.nl/.
Thank you very much for echoed our spirit with so much talent!
Best,
Lili

Hi Jill. I too have a blog although do not talk about PD – just in passing. What I have learned ( diag. 6 yrs ago) that you have to conserve your energy too. Most people just don’t want to hear about it. We have to recruit able bodied friends & family to yell the loudest. FOR US. I am not being apathetic, just reasonable for me. I have found quite a change from3 yrs to 6 yrs. I did a bit on Breakfast TV, have written articles, chaired support groups, made a quilt for PDF.org New York to send to Glasgow, walked in 6 Superwalks raising lots of money, joined 23&me…I too am sick of the apathy amongst the public. Some have said to me: at least it’s only PD! If they only knew the reality. It’s difficult when one minute you’re great & then shaking for the next 3 hours. I would love to talk to you. Robbin @ PSBC can hook us up.! Michael J Fox has been incredible…he has brought this disease out of the proverbial closet. I still want to laugh every day & hold my family close. Hope to talk soon! S.A.

Jill, I reread your blog post, still recovering from the intense experience as an advocate for Parkinson Awarness Network (PAN), in Washington, DC, Feb 24-27, 2013 We focused specifically on funding, pushing meds/therapies through the pipeline. Yet, for me at least, there was not just a sense of urgency, but sorrow, as pwpd meeting every two years faces…the changes that potentially confront us all. I have never hated this disease so much in my ten years of fighting as when I watched the two recipients of the advocacy awards…and the cool as a cucumber Director struggling through tears. There is desperation, even at the top of the advocacy network. We fight not just apathy but also that many of us want to be good, kind, people. And good kind people DONT rock the boat. They DONT squeal like the wheel needing greasing. We are rewarded by the rest of our society when we say things like “this diagnosis was the best thing that ever happened to me” or “I have PD, but it doesnt have me.” This as we all know, with PD, is rubbish. I DO suffer from anxiety, depression, a sense of foreboding, a slip down through the cracks. I am a member of a club I never wanted to join, I am alone, increasingly isolated, sometimes questioning my sanity, wondering how on earth I got here?

And still I seek companionship, other than my dog, cat, daughters, and garden. I am alone, with no car, few friends, busy kids doing their own living. When I returned from WA, DC, I discovered my current male friend got distracted by his own fantasies with a much younger woman, who is the age I was when diagnosed. My sense of betrayal is profound, somehow made worse by the sense of injustice that it occurred while I was away, doing important work. Geez, if there is a God in our worlds, I must be a boil on his butt.

In any case, if I survive each day its cuz of people like you who are still relatively new. Dont be polite; scream; be strident;get in peoples’ faces. tweet and fb and do it, but do it now. Write to your politicians, letters to the editor…Im getting tired of fighting not only my body but the “systems” that would just as soon dump me as get what little money i’ve got left (and as a “taker” that means poverty level) Im starting to tire out…

Catherine, your words are coming from your heart , and you like me have a big one. We in our professions have been caregivers, we get it from all directions. PWP are too positive, an element of desperation. I see it in my local PD community just how isolated , desperate and lonely we are .And you are right we don’t want to portray it to the world. We want to appear strong, run marathons and fight but I believe our energy fighting is going in the wrong direction. I do believe we have to be more militant and get out and show our symptoms as hard as that may be.. There is no more room for being polite, no more time. I don’t want to be like the advocates now who are backing off due to health reasons.from the progression of PD, a neuro degenerative disease with no cure. There really is no hope. Ask them, I see it in their faces. We are all desperate and scared. I also believe the majority of the researchers , allied health care workers and doctors never really see our day to day struggles, they don’t have the time. Well join me , let’s start a revolution . We have nothing whatsoever to lose at this point . The disease will force us out of advocacy and then we too become the forgotten voices.

Catherine, remember we are with you. I know how you feel. Keep exercising – it helps keep the negative at bay. Embrace the sun (with sunscreen!) It isn’t the best thing that ever happened to me. Recruit passionate friends & conserve your strength. They can yell the loudest for you. All my best, Sue…from all of us. Maybe we should make a flash mob at locations all over the province.

sue, I LOVE the idea of a flash mob …! Jill, if there was any hope in the faces of the researchers and scientists, it was with the pro-exercise movement. Since this is a big push in the Obama administration’s current health plan, and a personal campaign run by Michelle Obama to get kids moving, it makes sense to put it on the table of our PD consortium. The practical, day to day application of this is not so simple, however. I myself have experienced the limelight for becoming an “outlier” but I have also experienced loss of skills on a regular basis…going from a triathlete to soccer player to slowly feeling a loss of balance and gait changes..The reality is, most people with PD dont exercise enough, and how can we judge them? If a gym membership or class or the cost of a bike is over the means of people living at the poverty level, how do we get them moving? How do we even get them to stop bogging down in apathy? When anxiety over the future makes one want to go to bed pull the covers over your head and hope you wake up in your old life?

i have friends who check in regularly…thank god. it takes a village…But Im also finding myself restricting my activiities because Im afraid people will judge me as being inebriated. it happened at the PAN forum at the gift store, when I clumsily knocked over a shot glass in the gift shop of the hotel we stayed in. I cringed and paid for it, but really felt shamed as the owner pointed to my half consumed glass of wine I was carrying up to my room to have with my dinner and “tsked” me. The hotel nicely sent a plate of chocolate covered strawberries and bottle of water with the apology note (made out to “cindy”) neither of which i could consume, since i was leaving next day.

This is 2013! and we still face discrimination which will not change with the disease progression!! This is our current reality! And this makes me sick to my stomach!! I so dont know how to fight deliberate ignorance. “Awareness” works only when one’s mind is open to the outside world.

Yes Catherine, I too feel there are only 2 ways to go here, one is into the big black hole of isolation and despair OR exercise, we have a movement disorder so it only makes sense to move. This however is a HUGE barrier for PWP, I too stopped exercising at the local gym , and even walking in my neighbourhood as I saw the looks , there is that physio who has PD now, watch her shake and go into distortions when she exercises, I was a spectacle. All this did was increase my anxiety level to agoraphobia, and much worse PD symptoms.
Then Becky Farley came up to Vancouver to teach the physios in BC about her PWR!Moves. I signed up as a physio, didn’t tell them I had PD, however I got caught (of course lol) as the BC PD Society was sponsoring course and linked me to the registration list. I was asked to get up and speak to the 80 physios about what it was like to have been a PT and have PD . I told them exactly what it was like.
The course was a savior for me. I brought back the info to The Victoria PD centre, they poo pooed it so I took it on myself and advertised, I currently have 20 interested and a core of 6 (that is all I can handle) who all show up at the local rec centre at 115 Mon Wed and Fri . We stay for 2 hours.It has been amazing what this has done for us, we have broadened our support systems, we laugh, we motivate each other and we are all functioning better. The cost was negotiated with the local rec centre and I was able to get subsidized, our PD group pays 50% less if $ is an issue. I volunteer my services.
My next task is to train some personal trainers so they can offer the exercises at other rec centres here in Victoria. My plan is to train Kinesiology students who want to volunteer their time so no extra cost to the PWP. We need to reach the isolated!
The exercises can be adapted to anyone with PD in any stage of PD. Becky Farley has it figured out . It a progression from the LSVT BIG . http://www.pwr4life.org..I hope to train and teach PWP over skype as long as they have an exercise buddy it is feasible. Hey I am going to be in Seattle next Sunday eve PM me your no. xoxox Jill . http://www.i-m.co/change/parkingo/

I can relate to the ‘breakage’ and having to pay for it! I was having severe dyskenesia in a “well-known drugstore” while waiting for all my prescriptions to be filled. I guess the store detective thought I was on crack and stood right next to me. I was extremely embarrassed (& angry) & asked him if he knew what Parkinsons was. His face went bright red. In April each year, I buy lots of vases and fill with tulips at my expense. We take them to Starbucks, City Hall, MLA, Police station, couple of banks, Tim Hortons, pharmacy etc. I attach the freeze brochure. It is my mini awareness campaign! Give some thought to the flashmob. My nephew is a film editor & he has many contacts. My friends partner works for CBC. A school chum works for a radio station. Think of all the contacts we all have who might be able to help! I am sick of the anxiety too. There is next to nothing here where I live as far as exercise goes. I’ve heard the same things since I was diag. in 2007. I’ll be 54 & sliding.Like that old song….we’re not going to take it! Cheers! Sue blog paintingblissfully.wordpress

I think we should go for the flashmob! I too have broken beautiful pottery pieces at Christmas open houses.:( . As far as exercises go Sue email me your phone number , we need to chat live ! http://www.i-m.co/change/parkingo/

Hello Jillian, Thank you for visiting Chronicles Of A Dystonia Muse. Thought I’d share a post I wrote regarding Parkinson’s – http://dystoniamuse.com/2013/04/11/april-is-all-about-parkinsons/ – a worthy read as it links to a fabulous article by a college professor of mine who has Parkinson’s. It’s my firm belief that those of us with movement disorder need support one another. My blog may address Dystonia but it truly applies to all of movement disorder. In addition to my activism, I volunteer at the Bachmann-Strauss Dystonia & Parkinson Foundation, a wonderful organization battling both disorders, and this year I volunteered at the Parkinson’s Unity Walk in NYC. Best to you. -Pamela-

Jillian, Just saw your video and tweeted it to my followers. I think it’s truly amazing all you do. Volunteering at the Parkinson’s Unity Walk this year was an amazing experience. I’m thrilled you were able to walk it in 2012. Are you on Twitter or Facebook? -Pamela-

a year has now passed since i last commented herein. In the interim my admiration of you continues to grow. I believe that it would go a long way towards putting everyone with pd on the same page if there were to be a tour of the country wherein the various regional PD personalities would go in a tour bus. The tour would stop and talk to the grass level support groups the stretch across the u (of course the us is only the beginning). While i respect the current national pd organizations, i would not take any of their reps on the tour. With the proper financing and news coverage you would have a very sound start to a global unification of those with pd.